Sunday, January 14, 2007

Of course, we take this personally

In the Ottawa area where I live, if you give birth to a child with Down syndrome, and you receive a Parent Pak from the Down Syndrome Society, you will find tucked inside a letter from me, talking about our journey into the world of Down syndrome, our family, and our experiences.

The letter is not sugar-coated; I speak of those first years of Paige's life that were so filled with many medial interventions, and of all the changes that we made in our lives to welcome this girl of ours -- the therapies, the changes in perspective that we made, etc.

But, I hope that it is a letter of pure joy that can only have come from knowing and loving Paige; one of the challenge of unconditional love in a way that some parents may never understand, but one that our family embraces every day.

Often, I get calls from families who have just given birth to a child with T21 - who have read my letter, and want to talk. I know how difficult that first call can be; as I remember finding out prenatally that Paige had T21, and speaking to a wonderful person from the DS Society here in Ottawa.

I remember her telling me stories about her son, and feeling so free to ask questions that I could not ask anyone else. And none of those questions were shocking to her or strange to her. She was just a normal mom, raising her son.

It was very comforting to me, and I hope that I have made this journey easier for many families during the last 10 years. I know that I have built friendships with some people that will never end because of that letter -- my friend, Camille, and her absolutely amazing daughter, Emma, who will be a part of my life until my days are over. And our mutual friend, Carol, and her daughter, Olivia, and so many more...

And so, it is, of course, my hope that my "ministry" has made a great difference for many people. I hope that people see me not so much as inspirational, but as a regular ol' mom who shows them that they too can take this journey.

I've also remained relatively active online throughout the years, with breaks when my heart was overwhelmed and overburdened because there are so many people still to touch and connect with.

There are times when the debate has gotten not so pleasant. There is a woman whose daughter was born with Turner's Syndrome, and the same congenital esophageal birth defect Paige has that still spends lots of time on pro-termination boards. She is bitter and angry that she gave birth to her daughter, now about 8 years old, and was not given a choice to abort her. She openly says she would have chosen abortion had she been "warned."

Her and I have gone back and forth thousands of times, as I fear that she is doing a great deal of damage by making this her agenda -- virtually stalking prenatal boards and urging people to terminate.

She paints a horrible, sad picture for people to see, of a child with a great many needs; how it has ruined her life, her marriage, her career. I believe that she needs a great deal of help and worry so much about her child; it seems as if she is quite well cared for, but is she loved and adored?

And she would say the same thing about me; that I am too close to Paige, that I don't "have a life", that I paint too rosy a picture.

I don't know; I guess if I had to live one way or the other, I'm glad I chose this way.

I'm sure that I haven't always made the difference I've wanted to make. I know that I have sometimes spent hours speaking with people online after a prenatal diagnosis, and they have still chosen abortion. I know in my head that I was not their deciding factor; surely they would have had more people, more connections, and more contemplation than that of what I had offered to them.

But it is still painful and personal to me when we lose "one of ours." Its very hard for my heart not to ache, and my head not to wonder what I could have done differently; what I could have said; how I could have reached that person with what I believe to be the real truth -- that our children are so, so much more than a diagnosis.

About 6 years ago, I got a called from a woman who's partner was pregnant with a child who had just been diagnosed with Down syndrome. I spoke with her on the phone a great deal; e-mailed them, and finally invited them to our house to meet Paige and our family.

I knew that they were an alternative family; and that this child was very much planned for and wanted. They were intelligent and friendly, and also very pragmatic. They were indeed doing their research, and readily admitted they had not decided what they were going to do yet.

When we met, they were about 10 days away from their "deadline" (what an ironic term) -- after that, abortion would no longer be an option.

To be fair, they did the footwork -- they had read a ton on the internet; they had interviewed the doctor who runs the T21 Clinic in Ottawa; they had told their families about their son, and the fact that he had Down syndrome.

We spent hours together that day; and I learned a lot about them; about how they had fallen in love; how they had to tell their families that they were gay. They had a wedding ceremony, and one of the women had a daughter from her first relationship.

They were, by all observations, a very loving couple. I gave them a copy of "Expecting Adam" and dedicated it to their baby.

I compared their lifestyle with the upcoming birth of their son; how it would be hard to tell people in the beginning; how some people might judge, and look at him strangely, but, in the end, how the people who mattered would embrace him and adore him.

They shared honestly with me that they had been very lucky to conceive on the first attempt at artificial insemination; that it was a costly procedure that they could not afford to do over and over again, but that they felt somewhat cheated that what might be their only chance had so many unexpected complications.

They considered abortion because they wanted a "normal" child, and did not feel as if they had the gift of time to do it again after he was born.

At the time, Paige was not well. She had just had surgery to remove her gallbladder after a very, very sick winter where we did not know what was going on. We came close to losing her that winter, and she was frail and delicate.

Paige is quite low-functioning, and at the time, was pretty shell-shocked from so many medical interventions. She wasn't bubbly and outgoing during their visit, but rather quiet and aloof.

I felt as if they looked at her rather than to her -- they seemed to be observing, pondering, wondering. I didn't see a connection to her made, and that bothered me very much.

Like all mothers, I wanted them to see her as the beautiful, sweet child that I embraced. I wanted them to see beyond her limitations, to the fact that we knew that she would soar no matter what.

Perhaps it was too early for them to see that, or perhaps they really did see it.

I will never know.

Later that week, I received a final e-mail from them telling me that two days after they had visited, that Beth had gone into labor and delivered a stillborn baby. They asked me not to contact them again, as it was too painful for them.

I will never know if she did in fact go into labor or if they decided on abortion. I will never shake the feeling that I may have failed them.

Lately, I have been particularly haunted by them; as my friend, Nicole, has been touched by the adoption of a child with T21. I didn't even consider it; didn't even mention the possibility to them.

Perhaps that would have made a difference, and perhaps a family would be embracing that child now.

We praise and embrace people who chose to adopt, but we have so far to go to support the families who decide to give these children to loving families.


Shelley said...

Betsy - I know what you mean - but at least these people are considering their decision - perhaps they like our children with T21 are just being who they are - different from us.

Still you are right - it is such a shame. I have a very good friend who had all the testing done - it felt odd to me - I didn't dare ask was the testing going to lead to termination? She is Hannah's Godmother after all. I am pretty sure that it was more from a 'need to know' basis and I would hope that had the diagnosis been different we would have had a better chat about it.

Another couple who are good friends of ours were over for dinner the week before she was to have a pre natal test done. We reassured them openly - by us having a child with T21, their odds had already improved - but even if it did happen - we could wholeheartedly assure them and I know that they could see too - it wasn't 'so bad' at all. They too know and love Hannah as 'just another member of our family'.
God Bless you for opening your heart and life to help others.

Monica said...


I love your line about being "just a normal mom, raising her son". I hope that this is exactly how I am viewed by others as this is what I want for both me and Mikey.

I do think that the fact that there is a third option (adoption) out there is slowly coming to the forefront. It almost sounds like the story you tell is at around the same time as I was going through adoption process. When I first adopted Mikey, I was shocked at how many people didn't realize there was a waiting list to adopt children with Down syndrome but as the 7.5 years have gone on, I find more and more people who are aware of this. It has already been a long journey and will probably continue to be a long journey but I have seen change in this area in those 7.5 years. Perhaps some of it is the people I come to know but I think there is just a lot more information out there about it and there are books like "Choosing Naia" that state the fact. Oprah, some years ago, did a show on the topic (if I recall correctly, she had Robin Steele on it). Even the name Robin Steele is more widely known and thrown around. Having lived this for 8 years I can say that steps have been made... it would be nice if they were made quicker but isn't that the case with everything?

And finally my personal opinion on some of this: Ironically I think that part of the lack of support for birthparents comes simply because adoptive parents seem to be "oversupported". I cannot count the number of times that people have made comments to me about how lucky Mikey is and what a great thing it is that I have done... BLAH, BLAH, BLAH! I know and understand their intentions but I wonder that if those kinds of things don't set up an immediate comparison in a birthparent's mind and perhaps hold them back as opposed to move them forward. Ultimately a birthparent has to make a decision that they can live with and there are varying opinions on what "should" be done. The reality is that making either the choice or parenting or setting up an adoption plan is a loving a choice as it involves allowing a child to live. I think we all just do what we do for our own reasons. I adopted Mikey for my own private reasons just as a Mikey's birthparents chose to set up an adoption plan for him for their own private reasons. I think the most important thing is that each of us individually owes our choices as that is the only way that anyone can move forward. For me the choices that Mikey's birthparents made just are and I do believe they made them because they thought it was in Mikey's best interest. I do also believe they had it in them to parent Mikey but it was not what they chose so that is that. In the end, I just thank my lucky stars each night as I kiss my son goodnight that these were the decisions that were made.

Camille said...

Betsy, I know this from facts. You are an amazing mother. I believe that by just being who you are, with the way you so embrace Paige's life that YOU ARE MAKING A HUGE DIFFERENCE WITHOUT EVEN KNOWING ABOUT IT. Everytime that someone notices you and Paige enjoying grocery shopping together, everytime that someone notices the love and the joy that this child reflects in your eyes, everytime that someone notices how many people know Paige and greet her with happiness in their voice... I could go on and on, but I am convinced that there are people out there noticing and wondering why we seem so at ease, so happy to be just parents... We must know a secret, maybe, if they try a little bit harder, they too could hold the key to happiness...

Nicole said...

I adore you and your wisdom. I have never heard that story from you before. That would be very hard indeed. I am sure that you did everything God wanted you to do. And that is all we can do. Much love honey

Monica said...

Betsy - I hope you do not mind that I used one of your lines (and quoted from your blog) on my blog in my recent post about adoption. The whole concept of adoption has been forefront in many of my thougths lately. I came up with more questions than answers when I tried to write it out. Oh well... such is life!